Open UK: Investigating family planning, pregnancy, and parenting for people with ME/CFS - the faMELy study

Hello,

I am part of a team of researchers at Newcastle University – funded by the ME Association, interested in finding out more about family planning, pregnancy, and raising children for people with ME/CFS.

The overall aim of this exploratory study is to highlight research priorities, and further the existing evidence base related to ME/CFS, family planning, pregnancy, labour and birth, and raising children.

We currently have two opportunities for participation in this study; one for people with ME/CFS, and one for health care professionals.

For people with ME/CFS:
We would like to invite people who have a diagnosis of ME/CFS, are aged 18 and over, and living in the United Kingdom, to take part in an online questionnaire about their thoughts and experiences relating to family planning, pregnancy, and raising children. There will also be the opportunity to take part in an online interview exploring these experiences in more detail.

Within the questionnaire there are questions relating to a wide range of experiences including those from:

• People who have been previously – or are currently, pregnant
• Those who have not experienced pregnancy or parenting
• Specifically from men with ME/CFS

As the number of questions you will be asked depends on your own personal experience, we are unable to provide an estimate of time to complete the questionnaire. However, there is an option to save your responses, and finish the questionnaire later.

The questionnaire for people with ME/CFS, participant information and consent form can be accessed here: https://bit.ly/4cW6WYu





For health care professionals:
We also have a survey for health care professionals, including midwives, health visitors, obstetricians, and experts in the field of ME/CFS, in the United Kingdom. In this we are exploring the support provided to people with ME/CFS around family planning, pregnancy and raising children.

The survey for health care professionals, participant information and consent formcan be accessed here: https://bit.ly/3VW7bNj

We anticipate the survey for health care professionals will take between 20-40 minutes to complete (and there is an option to save responses and finish later).




The project has been granted ethical approval by the Faculty of Medical Sciences Ethics committee at Newcastle University.

Thank you very much for taking the time to read this information. If you have any questions, or would like more information please contact faMElystudy@newcastle.ac.uk

Many thanks
Emma

Dr Emma Slack on behalf of the faMEly study team
Population Health Sciences Institute
Newcastle University

 

Hi @EmmaS302 welcome to S4

 

Thank you

 

Hi @EmmaS302, thank you for sharing this. Unless I missed it, I think something useful to say would be to give members here an estimate of how much time it would take to complete the questionnaire.

 

I think studying having children and ME/CFS is valuable, as this area isn't well-researched, despite the fact that raising a family is a major life priority for many people, illness or not. Some people may decide against having kids due to ME/CFS but others may want to, be have a pool of information about others' experiences.

 

Hi, and thank you. I have ME/CFS myself and had a baby in 2022. I realised when my husband and I were starting to think about whether or not we would be able to manage etc. just how little evidence there is, and the implications this has for practice. My background as a researcher is in parental and child health, so I wanted to use my skills to try and improve the evidence base, and also I hope, care for people with ME/CFS eventually. We have other members of the research team with ME/CFS, and those with lived experience of the disease so it is something we are all extremely passionate about.

 

Hi, Thank you for your question. I know this would be really helpful, but unfortunately we aren't able to provide this for this questionnaire -- We do state that "As the number of questions you will be asked depends on your own personal experience, we are unable to provide an estimate of time to complete the questionnaire. However, there is an option to save your responses, and finish the questionnaire later." I hope that is helpful.

 

Thank you so much for your feedback -- As this is only a small pilot study we are testing what does and doesn't work well, and looking for feedback on what we have done this time round to help us shape future research plans. This project doesn't include access to gynaecology treatment generally thats not related to family planning, pregnancy, but we realise this is also an under-researched area.

 

Post on ME Association website:

https://meassociation.org.uk/2024/06/the-me-association-pregnancy-study-would-you-like-to-take-part/